I'm a lousy sick person

For whatever reason, I got sick this weekend. Sinus crud, stomach crud, aching....and I do NOT like to be sick. It stresses me out, because all I can think about is all the things that I need to be doing and how I really don't have time for this bologna.

But......I ended up spending the vast majority of Sunday in bed. Sleeping. Accomplishing nothing. Now I'm behind on everything. UGH! Oh well....not much I can do about it.

Fortunately, I was scheduled to be in the office today, so I have been able to work today from home, without having to totally re-shuffle the calendar the rest of the week. Tomorrow, I have to be on the road, so I hope I feel more rested by then.

I am such a lousy sick person.

3 steps forward.......2 steps sideways.......

Jennica has had a very phenomenal week. She's been easier to reason with, slower to tantrum and much more likely to verbalize first (and then tantrum if she doesn't get what she wants), and has been showing some huge improvements in motor planning functions, which involve the multi-step progressions that we all tackle daily, but are often difficult for those with SPD due to the massive sensory input that comes common tasks such as getting dressed. (Most of us have done it so many times that we don't contemplate the sensory input involved with choosing articles of clothing based on weather outside, season, color, practicality of what our day will involve, and then undressing and dealing with the temperature change on the skin while we re-dress, the changes in gravitational input that our body experiences as we bend and twist to put on socks, shoes, etc. And the dexterity involved with fastening buttons. And on and on and on.)

The huge sudden progression is due to a variety of things. She has now been gluten-free for about 10 weeks, which is a logical place where the gluten may finally be almost totally out of her body. We've also "played" with some of her supplementation based on her lab results. And, finally and probably most significantly, our OT added a 5-minute routine into her therapy each week. Believe it or not.......a specially-designed music listening program that somehow gets her brain and her ears on speaking terms with each other. I know.......I know......I don't get it either. But its WORKING!!!

So we marched into therapy this morning feeling like we've made some really huge strides! Even better, the strides are really evident to other people in her life, so I know it is not just a case of parent-wishing-success-upon-their-child. The Day Care is wanting to know what has changed. The preschool teacher is asking why she's suddenly much more cooperative. And the OT is seeing physical and cognitive changes both. YES!!!!

And then our bubble was burst. With progress comes the unavoidable consequence of.....progression! While this is truly a good thing, we didn't get much time to bask in the glow of success. Our OT is taking full advantage of the open mind, and piled on a whole new set of information for us today. I had a real "lightbulb" moment at therapy today, as some information with Jennica's use of her hands and the "why" suddenly and totally clicked for me. She has always had very good dexterity with her hands, so some of the things that she is reluctant to do, such as handwriting for very long when she will color forever, hasn't made sense to me. Today, I got it! Tiny, subtle changes in hand position make all the difference as to what muscles are driving what. And, even better, I'm learning the tools to help her strengthen her good skills, and build on the weaker ones!

And the vision therapy is finally falling into place. Its taken a few weeks to get all the team members in position, but very shortly, we will be proceeding in a full-blown visual processing program.

So......progress is leading to new therapies and more work. It is so great to see the dark circles (a sign of severe food allergies that nobody ever mentions until AFTER you've been diagnosed......go figure) disappearing beneath her eyes, and she's FINALLY sleeping a continuous 10-11 hours per night. And the beat goes on.........

Mid-week madness!

Ah......Wednesday. The day where its too late to pretend I'm on vacation, and too soon to figuratively turn off the phone and go back to bed. This week, I'm trying to see the oddities in life as humorous, and just going with the flow.

1) I saw a camel today, while out inspecting a property. Yes......a camel. In a pasture. In Southwest Washington. He looked more than a tad out of place. Where do you buy a camel? How much do they cost? What do you feed them? What kind of veterinary care do they require? All questions to ponder when you're in the middle of nowhere and wonder if you're hallucinating. I took a picture.

2) I travelled today to a neighboring area with a strong wrestling team that competes against Dane's team. In fact, I saw several of their team members last weekend at the Regional wrestling meet. Their wrestling uniforms are solid black singlets with "Go Mules" written across the rear end in red writing. Whatever coach ordered this wording placed there should be shot, and I'm shocked and amazed that the boys actually wear them. And in public no less.

3) I made gluten-free/casein-free/egg-free biscuits for dinner last night. This is the second time I've made them, but the boys weren't home the last time. The flavor isn't bad, but they are made out of potato starch flour and an odd concoction of other ingredients that results in albino-white (will NOT brown at all) circular devices very similar to hockey pucks. I think the boys finally decided last night to refer to them as "Bulletproof Biscuits," as they are very hard on the outside. These aren't something I would ever subject anyone outside the family to, but Jennica devours them! And since this is the ONLY bread-type substance that she has been willing to eat since the first part of December......what the heck. I'm hoping that maybe if we keep feeding her these, maybe someday we'll get her to eat gluten-free bread of some sort. Even occasionally for a rare sandwich would be good.

4) And speaking of food........I'm fighting cravings. Bad. Cravings for things like Seafood Alfredo piled with creamy cheese. And garlic breadsticks. And PIZZA!!! We don't all eat strictly with Jen's regimen, but we try to stay pretty close out of respect for her. I think I'm due for some cheesy, gluten-filled binging. :)

5) And one last note on Jen........she was diagnosed with a Vitamin D deficiency. Very common and not real surprising. But like two days after the lab results, we also got an email that stated that Vitamin D deficiencies in children cause stunted growth and weight gains. So........if she wasn't deficient on Vitamin D, she would already be 6 feet tall? She is SO tall for her age that we just sort of laughed about this one. Not applicable here.

Happy Valentine's Day!

Make an on-line slide show at www.OneTrueMedia.com

For Mike,

My husband, partner, best friend, and knight in shining armor.

I love you!
Beth

Speechless!

Yep.......I know I try not to post political stuff. Particularly political stuff related to appraising. But this is just too darn important NOT to post!!! With unemployment lines and foreclosure lists lengthening daily.....the last thing that should be happening is a removal of safeguards. That's all I'm going to say. Read the article below and make up your own mind.

Fannie Mae Eases Appraisal Requirements; Too Early to Assess Impact
Starting April 4, Fannie Mae will no longer require appraisals or property inspections from some borrowers who are refinancing mortgages. Instead, Fannie Mae’s Desktop Underwriter system will validate property values through automated valuation models. The new requirements most typically apply to existing appraisals on file and for loans that already contain risk for Fannie Mae.

Under the new guidelines, lenders will be required to enter an estimated value of the house, which would then be compared with an estimate from an automated valuation model. If the two values are comparable, Fannie Mae will grant the borrower an appraisal waiver. If the two are not comparable, it will trigger an appraisal requirement.

Fannie Mae also reduced some eligibility requirements for its Desktop Underwriter Refi Plus program. Borrowers with loan-to-value ratios of 80 percent or less will no longer be subject to a minimum credit score of 580 and adjustable-rate mortgage holders with loan-to-value ratios of 80 percent or less will no longer be subject to a minimum credit score of 680.

Fannie Mae representative Brian Faith said the changes would let “potentially millions of current mortgage holders” take advantage of low interest rates currently available. However, Derek Chen, an analyst at Barclays Capital Inc., believes the changes will have a minimal impact, only amounting to the automation of existing underwriting standards. According to Carla Bandy, a senior underwriter at Everett Financial, it is too early to determine the impact the changes will have. “If you have a Fannie loan and are trying to refinance, there’s probably a comfort level because they already have you in a loan and you’ve made your payments,” said Bandy. “I don’t know if our investors will go along with that because they often put on their own overlays [in addition to what Fannie Mae requires].”

Are you friggin' kidding me??

Today, we made the trek to Olympia (again) to visit with Jen's naturopath (again). But this time, with great anticipation! The lab results were back!!

A little high here..........a lot low there.........ya da ya da ya da. Drastically allergic to all things wheat, rye, and gluten, and all things dairy. Nice to know that we called that one correctly. And.......drum roll here........severely allergic to eggs and GARLIC. The eggs.....okay, as they're on the list of top 6 allergenic foods. But GARLIC!!!????!!! Who has ever heard of a garlic allergy? Is she related to Dracula???

In any case, the labs overall were about what we expected. Thankfully, the things that need fixing are relatively easy to fix. We shouldn't need any IVs of chelating agents to remove toxic metals, and we do NOT have to remove all forms of sugar (including fresh fruit) from her diet (I was really sweating this last one). We're adding a supplement or two to her daily dosage which, at this point, what's 2-4 more pills in a day? Sad.....but true.

And no more eggs or garlic. Go figure!!!

Survival skills by trial and error

My sense of humor these days has been a tad "spotty." Sometimes its right at hand......and sometimes I can't find it anywhere, no matter how hard I realize, at an intellectual level, that the situation is so ridiculous that it warrants a good laugh. Here.......let me share a few things:

1) We're a gluten-free house, right? No flour, right? WRONG! We have rice flour, sweet rice flour, tapioca flour, potato starch, expandex............we look like a canister factory. There are even MORE choices of GF flours, but so far, I've drawn the line at these. We tried garbanzo bean flour, but it has a nasty flavor. In fact, I carefully read the ingredients list now for anything we buy pre-made. If it has any form of bean flour, it stays at the store.

2) Jennica threw a fit at a basketball game one night this week. A fit like I truly have not seen her throw in a while. She has consistently been having a tough time getting through Grant's basketball games this year, and claims that the sound of the basketballs bouncing on the floor hurt her ears. She is typically considered sensory-seeking rather than sensory-defensive, (something I will try to explain in this blog at some point) and she's been doing a great job talking to us about it. So we've been using various "tools" to help her get through the games. Difficult....but not uncontrollable.

Well, she totally lost it the other night. If she were an elephant, people would have been trampled to death. Thankfully, I got her removed from the game and to a visually-blank and auditorilly-quiet little alcove down the hallway, and then held her until she was able to regain control.

In any case, we survived it and she was able to verbalize that it was the noise that she couldn't handle. This verbal connection is a HUGE step forward. So.......the very next night, of course, we had another game in exactly the same place. This time, we went prepared with headphones. The kind you wear when you run machinery. I was a bit skeptical as to whether she would wear them, but she LOVED them. She marched proudly into the gym wearing her snazzy headgear, and was all smiles through the whole game. An absolute breeze. Go figure.

So.....lesson learned. If she says that something bothers her ears, give her the benefit of the doubt and try the headphones. If anyone thinks she looks funny, they're welcome to deal with her sans headphones.

3) Jen has been very accepting overall of her diet. Amazingly so. One of the few things that has bugged her is having her syrup out of a different bottle in the morning than her brothers and sister. It doesn't make sense to me that she knows she is eating a different type of waffle than they are and is fine with that, but balks at the syrup issue. But, the days that we have syrup, its always an issue. So, I wised up. Her syrup has now been dumped into the bottle that the other kids emptied this week. The older kids have been clued to the little mark on the bottle that will tell them that it is hers, and she will be none the wiser. And, worst-case scenario, one of the big kids gets her syrup. Its not really that big of a deal.........its just that "her syrup" is $10.00 for an itty bitty bottle of organic pure maple syrup. The genuine deal. No corn syrup, no caramel coloring, no artificial flavors. The way these guys use syrup, we'd go through a bottle every few days, if they were to get on a "waffle kick". $40.00 a month for syrup seems a bit steep to me, so the big kids that don't have the severe nutritional issues get cheaper stuff.

In any case, I feel kind of sneaky and deceitful for putting her syrup in a different bottle. I know, I know, I know........I'm really living on the edge, aren't I? :)

A good plan that went awry

Mike and I have been struggling a bit with Jennica's new vitamin/mineral schedule. The whole regime (Oops.....should that be regimeN?) involves a total of 17 capsules or tablets absorbed at at some point through the day. My original response to this plan was, "Absolutely NO way! Thats too many pills for anyone to be popping, much less a 4-year-old!" And then came the reminder of what gluten and casein do to her neurological system. Followed by a reality check of the amount of food that she would need to consume during a day to get all of these nutrients in her diet. And lastly, the facts of what her body will do if these nutritional needs are not met. So.....here we are. It still feels WRONG to me, but the other options are much, much, much worse.

In any case, we actually started with powdered forms of many of these vitamins/minerals, with the intent of mixing it into her food. Yeah.......whatever. Great intent, but putting it into practice was an absolute disaster. We very quickly learned that we were going to waste hundreds of dollars mixing goop into her food and then having her refuse to eat it. Which accomplishes nothing. The smell/taste of some of this stuff is beyond vile. The marketing campaigns always claim, "New and improved taste". If thats new and improved, the original stuff must have tasted like nuclear waste. In the process of reaching a point that we knew we HAD to get this stuff into, we found out that our daughter can swallow pills like a pro. Finally, a positive point to the sensory-processing disorder--she has a very poor gag reflex. So......we've switched over to pills on everything. No more bad smells, no more bad tastes, and we know that she consumes the whole dose every day.

But, as previously-mentioned, its a total of 17 pills per day. UGH! We've split them up through the day to maximize absorption, but it doesn't work very well if we have to be at a basketball game in the evening, or somewhere else, as certain vitamins/minerals can't be taken too close to bedtime or there IS no bedtime until midnight or so. So......we read up and found out that there is actually no medical reason that the whole dose can't be taken at one time. After a few nights of missing the 2nd half in the day as we scrambled to pull together GFCF snacks for games, grab dinner, pick up girls, get boys to or from the school, etc.........we decided that today I would give her the dose of 16 all at once this morning (the 17th is taken AT bedtime). Great plan.........right?

WRONG! VERY WRONG! Jennica had therapy today in Olympia. Something in that heavy of a dose of something, didn't agree with her. About 30 minutes from our therapy appointment, she vomited all over the suburban. And vomited some more. And then some more. The kind that you instinctively know is going to be EVERYWHERE. As soon as it was all out of her stomach, she felt GREAT. Chatting to me that she needed new clothes. Asking how far it was to Renae's. Asking for paper towels, while I thought to myself that it was going to take a lot more than paper towels to fix this problem.

So, we got everything cleaned up and got through therapy. She has felt great ever since! Once we got back home, I dismantled the carseat (thank heavens that both girls still ride in carseats so I simply had her ride in Tiersten's after the "mess"), I cleaned the carpet, and cleaned the carpet some more, I cleaned the leather seat, I cleaned the back of the driver's seat, and I fumigated. And I briefly wished that I had traded in the suburban today rather than cleaning up this mess. :)

AAAHHHHHHhhhhhhh........The joys of parenthood. The vitamin/mineral supplement schedule is rigorously back to twice per day. Never again will I do those 16 little capsules all at once.

When the brain can't process what the eyes see...

Today went about as we had expected. Interesting, but oh-so-incredibly-overwhelming. I am quickly learning that with the higher level of doctors that we're seeing, we are getting into the people that have a true passion for what they do. This doctor fit that bill! This guy knows, but the complexity of this field of study is mind-boggling, even for someone like me that loves to dabble in really complex topics "just for fun".

So.......here's where we're at. Jennica's eyes can see very well. Her eyes are healthy and she has good vision out of both eyes. However, her eyes and her brain have a communication issue. A big one. Her brain is not correctly "reading" the information that her eyes are sending, or at least not fast enough to keep up. She's obviously able to walk, talk, write her name, and all those basic functions. But when the field of vision becomes busy (such as a grocery store, classroom, basketball game, etc.), her brain gets overwhelmed and confused by the vast amount of visual input and can't sort it all. And so.....we see the breakdown in "organization" in her behavior as she struggles to cope with a brain that isn't keeping up with input as fast as its coming. In order to seek organization, her brain requests input from other areas of her body so that it can rely upon that input to function. Which means that rather than relying on her vision to determine her body position, the brain looks to her movement (vestibular input) to determine gravitational influences, etc. Hence, we get a child in constant motion in highly-stimulating environments. It is her brain's coping mechanism to deal with a difficulty in interpreting the information coming from the eyes. Believe it or not, this makes HUGE sense to us!!! Add that the brain is probably having the same problem with the information coming from her ears (still to be determined for sure, but highly likely), and aaaaaaaahhhhhh..........we have a textbook case of Sensory Processing Disorder. Or Sensory Integration Dysfunction, as it is also sometimes called. Voila. Bingo.

But now........the important part. What do we do about it? We are on the leading edge of science in this field. Sounds cool in theory, but SCARY. We don't really like being in a "guinea pig" position, but to some extent........thats precisely where we are. What if 10 years from now they decide that the way they treated kids with SPD 10 years ago was all wrong? Jennica will have been one of those kids!! But the other choice is to not try to treat her at all? Obviously, that doesn't make sense either! And so, we move forward. With faith. And prayer. And simply hope that if something is wrong, we'll see it or feel it or somehow know. We just have to do the best we can with the information that is available and the best expertise that we can find.

I will admit to being surprised by a few things at this point. First, this doctor is a huge advocate of naturopathic medicine, GFCF diets, and was blatantly supportive of a biomedical approach. He was thrilled to hear that we were already on that path, and believes strongly that it will be crucial to Jen's success. Second, insurance coverage is now a great big question mark. We are travelling onto a "lightly-traveled road." Not because there are not a lot of kids needing these therapies, but because the pursuit for answers is still in process. Hence, insurance companies are hesitant. We won't deny care for our daughter, but boy howdy, we're going to be broke in a hurry. And third, today was the first time in 4 years that we've ever EVER had a medical professional look at us and say that we're going to integrate her care between all the therapists and professionals now in her life, and we're going to work TOGETHER. We're going to communicate, we're going to make sure that we arrange therapy to train her brain in the sequence that is logical to maximize her learning and your money, and we're going to HELP this little girl succeed.

Quite frankly, I cried at that point and a doctor that I had never met before hugged me. I'm overwhelmed at the road ahead of us, the demands on our time with three other children at home and a house and our jobs, and the cost that we know will be involved. But his words today also gave me hope. And that means a lot.